Five things you may not know about frontotemporal dementia

In awareness-raising messages about dementia, the spotlight typically rests on Alzheimer’s disease as the most common cause of dementia, helping people to learn more about the condition and working to break down the stigma that surrounds it.

However, at Alzheimer’s Research UK, you’ll often see “the power to defeat dementia” next to our logo because our research focuses on all forms of dementia. So on our website you’ll find out about some of the lesser known causes of dementia, and also see what research efforts we’re funding to tackle each of them.

Frontotemporal dementia (FTD) is one of these lesser known, but equally devastating, forms of dementia, and it affects tens of thousands of people in the UK. This week is World Frontotemporal Dementia Awareness Week and we are doing our bit by discussing the five main things you may not know about FTD.

1. The complexity of FTD amplifies the challenges faced by researchers fighting the disease.

In Alzheimer’s disease, two proteins – amyloid and tau – are responsible for the nerve cell damage that causes the recognisable symptoms. However, unlike Alzheimer’s disease, the proteins that cause nerve cell damage in FTD are not the same for all people with the disease; there are different toxic proteins that cause damage in different parts of the brain. This complexity makes drug-discovery efforts to halt damage more challenging, as one drug may not work for all forms of the disease.

2. As well as presenting challenges for drug discovery research, the many forms of FTD that affect different brain areas can result in widely varying symptoms.

You may associate symptoms such as memory loss and confusion with dementia, however people with FTD more commonly experience changes in personality and behaviour, a lack of empathy and social awareness, as well as difficulties with language.

In another challenge to popular understanding, did you know that FTD can also result in changes in food preferences, the developing of interesting obsessions (see below), and even alter a person’s sense of humour – shown by research we helped to fund.

3. People with FTD may develop curious obsessions.

One of the key symptoms often seen in FTD is changes in personality and behaviour. This can be an aspect of the condition that is particularly upsetting for those around the person with FTD, as it is difficult to understand why the person you know so well is acting so differently.

These changes can also bring about new ‘obsessions’ including: hoarding, refusing to throw anything away; fiddling and touching everything around – a symptom called utilisation behaviour; and disinhibition, which can take many forms but commonly includes a loss of social graces. You can find an ‘A-Z of FTD obsessions’ on the Rare Dementia Support Group website, www.raredementiasupport.org/ftd/what-is-ftd/a-z-of-picks-ftld-obsessions.

4. Risk factors for FTD are not yet fully understood, but research is underway to find out more.

The discussion of risk factors for dementia is always a popular topic, with ‘Reducing your risk of dementia’ being one of the most sought-after booklets we produce. Current research shows that the best way we might reduce our risk is to stay mentally and physically active. But although this is good advice for the most common forms of dementia – Alzheimer’s and vascular – there are currently no known risk factors for frontotemporal dementia.

However, in some cases of FTD, genetics does play a role. Around a third to half of people with behavioural variant FTD have family history of the condition and around 10% of cases of FTD are known to be caused by a faulty gene that’s directly passed down in families. However, for the remaining cases, the search for clear risk factors continues.

5. FTD is the most common cause of dementia in people under the age of 50.

It is a common misconception that dementia is a condition exclusively of old age. Although we know that this is not true for dementia in general, it is particularly pertinent to FTD, as the disease tends to affect people at a younger age, and it is the most common cause of dementia in people under 50.

This, among other factors, may contribute to difficulties with receiving a diagnosis. On average, people with FTD can wait up to five years for an accurate diagnosis, and reports suggest that almost three quarters of people are initially misdiagnosed.

Alzheimer’s Research UK is striving to support research into FTD, and to date we have funded over £12.5m of research into the disease. This includes a £305,000 drug discovery project, funded by the Dementia Consortium – a unique partnership between Alzheimer’s Research UK, MRC Technology and five pharmaceutical companies.

We are also helping to support the Rare Dementia Support Groups, a specialist service that allows more opportunities for people affected by rare dementias to engage in research and access support. You can find out more about the Rare Dementia Support Groups on their website, www.raredementiasupport.org.

17 Responses to Five things you may not know about frontotemporal dementia

My memory has bn bad for some time now and concentration too. I’m not rember if conversations or arrangements- the GP says I can’t be seen by nhs until I’m 65 and the memory clinic can’t as I don’t have a buddy as they all work.

I have worked in a flag ship Dementia Home for many years, please don’t be fooled into thinking that someone isn’t hearing you. Quite often elements of your conversation are being collated and stored. Hours after visitors have left we often get to pick up the pieces when residents start to unwind and piece together some of the fragments of conversations that took place and the perceived implications.

Hi Lauren
My wife had FTD and I was convinced that she was able to hear what was being said to her. I also think that she understood things to a reasonable degree until a few days before her death. It’s almost like locked in syndrome.
Kind regards
John

My mum passed away at 60 years old – the official diagnosis was ftp vascular dementia she started with this at around 50 and was not diagnosed till about 53, she lost her speech rapidly which was horrifying as she was always very talkative, I continued to talk to her and tell her what was going on in the hope that she understood at least a little …
We could find no explanation as to what had caused this ( and her mother Lived to be 90) I support this cause to try and prevent further heartache for other family’s
My mum has missed so much as have we

My wife was diagnosed with this in 2008 aged 58. She has got very slowly worse over 9+ years. I am a professional scientist, not a medic, but the symptoms are so broad and variable that to label everyone as “FTD” seems too broad a category to be useful. We must at the very early stages of understanding, which is both disappointing and unhelpful to me personally.

So sorry to hear about your husband. We understand how difficult it can be to adjust to life after a loved one is diagnosed. There is another charity called Alzheimer’s Society. Their focus is very much on the care of people with dementia, providing information and services including respite care and support. We recommend that you contact them on 0300 222 1122 or email enquiries@alzheimers.org.uk. They might also be able to put you in touch with support groups for people going through the same as you. If you have general questions about dementia or want to know more about dementia research and how you and your loved ones can get involved, our Dementia Research Infoline can help. Just call us on 0300 111 5 111 where someone from the team would be happy to help.

My mum was diagnosed FTP language variant 5 years ago and I’ve looked after mum full time for 3 years now. I love you mum, you are my inspiration, you are strong and brave and you try soo hard to get me to understand what you are trying to say.
Does anyone have experience of achieving NHS Continuing Healthcare? We are about to start this process and would appreciate any insights specifically with FTP language variant. Many thanks

I have been diagnosed with FTD. I am 66. I think I have had it building up for at least 8 years. My speech is affected when I am trying to think about what I am saying, but at other times I can chat away easily.

I feel abandoned, angry and so frustrated. I think about taking my life when it gets worse. I have nursed many patients with dementia and cannot bear to think of being lost in my own world at the end.